Koaguitarman: Great Day! Going Home

[cotten]

Twyla, I continue to pray for Russ, for you and your medical team. I'm pulling for you all! Beyond that, respect for forum rules means that I can't add a whole lot. Then I noticed D. Ramsey's AGF signature.

cotten

[Glennwillow]

I, along with so many people on the AGF, wish Russ the best. We are all routing for you to get through this very difficult time.

- Glenn

[amyFB]

I'm a relative noobie here at AGF and this thread more than any other has shown the powerful beauty of a community of nice people.

Please add me to the list of well wishers.

yours in tune

[Danno]

Hugs Twyla and Russ.

Danno

[Koa Lady]

Cotton,
This is Twyla. I was finally able to figure out how to log on and reply to a post. I'm sorry if this thread is somehow not following the forum rules. It is not my intention to disrespect AGF in anyway. My knowledge of an error is unknown to me.
Ahh, after re-reading several times I understand. Thank you

[Koa Lady]

This is Twyla. I have been able to read all of your very thoughtful, loving and caring posts. I am so very thankful and humbled. Each of you have reached out to my husband, Russ/Koaguitarman and left posts that are treasured beyond words. I have shared with him that Dennis started this thread on his behalf and we are grateful and blessed to have a friend that has gone the distance and back to support us and share with you.
It is overwhelming the support you have continued to keep throughout Russ' medical process. I am confident he will pull through this and be able to thank you himself when he is home and when he is able.
I Thank You so much, you really are family here. AGF has brought the most amazing people together. Thank you all for your support

[cotten]

Just to clarify, Twyla, I don't think you or others here have broken AGF rules. One of those rules is that we don't discuss religion, though we are allowed to have prayer requests and tell someone we are praying for them. Since I'm a deeply religious person, it would be very easy for me to go beyond forum limits, so I stopped short of saying what's in my heart. I don't disagree with this forum rule - I may have written it! It's just that there is so much more that I could add if we were talking privately.

There are at least 20 more people here in Middle Georgia who are praying for Russ and you, folks you'll likely never meet. AmyFB is right, the AGF quickly becomes far more of a community than just a collection of posts from distant strangers. That sets the AGF apart from many online forums.

cotten

[Glennwillow]

Thanks for that post ^^^, Cotten.

- Glenn

[Mary]

I have been keeping in touch and occasionally commenting through Caring Bridge.

This is great to be so well connected to you here, too, Russ. I know you are reading and keeping an eye on all of us.

[D. Ramsey]

Transplant Day +32

By Twyla Baur Lewark — Jan 26, 2015 1:35am
I woke early and left at 4:00 am to go home and care for the dogs, shower, take care of any mail etc. I made it back to the Hosp. by 6:15 am.


The day started out with the counts dropping again. The Dr came in and said the numbers are dropping slower now so they take that as a sign that he is stabilizing. His counts are:


WBC 4.4

HGB 9.4

PLT 48


I don't agree. If they are still dropping there is a reason. And I don't think that is stable.


Tomorrow the counts will be checked again and if they are (stable) dropping slower they will schedule a discharge date. We will see. The Dr said at this point Russ counts are well enough to go home and he is already on all pills so they can treat any issues as an outpatient. 😕 and if his counts continue to drop they can give transfusions as an outpatient also. Russ may need to be re-admitted to resolve some issues but they won't know that until he is discharged. it will be nice to go home. 😐


The music therapist brought her daughter today who plays the clarinet and horn?? Russ was invited to join them in the 6th floor lobby to play some music. They played for about an hour. Russ seemed to be having a good time. They played for an hour before Russ returned to his room.


After lunch, relaxing and a nap Russ was ready for his visitors for this evening. Ashley and Josh came in from just finishing at Ashley's winter recital with her dance company. Her group did a cute western flare number. They visited with us until our dinner arrived and then left to go get their own dinner.


We laid in our beds and melted into the cushions to watch TV before going to bed for the night. I think we were both wiped out.

[D. Ramsey]

Transplant Day +33



By Twyla Baur Lewark — Jan 26, 2015 5:31pm
Dr. Just left. He said because Russ is not drinking any fluids to amount to anything, they cannot discharge him. He needs to be drinking 48oz each day - throughout the day, not all at once. Until he can do that and maintain that level without any stomach issues ie: GVHD-nausea-diarrhea-vomit-etc. He will not be able to be released, otherwise he will be right back in the hospital for dehydration once they stop the saline IV.


Russ said he can't drink that much because he already has to go to the bathroom due to the bags of saline and instant urgency. Dr said that instant urgency is due to the urinary tract infection he has been fighting for over a week now and the virus is still at a very high level. But the more water/fluid he drinks should help to flush that out of his system.


He is pissed, (no pun intended) he wants out of here. Today he will need to drink 48oz of fluid!! And tomorrow and the next day and continue once at home.....


All the counts dropped slightly again last night and he needed a potassium IV this morning. He also needed insulin this morning and this afternoon again because his glucose is still to high.


His blood pressure is still in the upper 150 over upper 90. Tonight it was 160 over 98. The glucose and blood pressure issues are due to steroids he is taking to fight the GVHD. He is still getting magnesium in the saline IV plus magnesium pills. So we will see what happens when they stop the saline if he ever gets discharged. *This afternoon they have discontinued the magnesium in the saline.


The picture today is Russ' way of dealing with this current setback for discharge.


He has napped most of the day and requested pain medication for his stomach/GVHD pain.


This afternoon he ate his meal and received his pain med for his stomach.


His dinner and evening pills helped to add more of the needed liquids.


He has now accepted the Dr orders and completed his 48oz of water for today.


He still needs to follow the Dr orders and walk twice a day to get his muscles and joints working and to help all his organs process easier with movement of his body. He wasn't ready to accept those orders today. We will work on that tomorrow.


He has received his evening medications plus his nightly cocktail of pain meds and sleeping pill. So he is out for the night.


Tomorrow we start fresh.

[D. Ramsey]

Transplant Day +35

By Twyla Baur Lewark — Jan 28, 2015 8:58am
Counts still dropping. This makes 9 days in a row with 3 transfusions and another 4 IV bags. Dr. still says he's stabilized. They want him out of the hospital as much as we want to go home. Some things are working in Russ favor and some are fighting against him.


WBC 3.5 PLT 44.


It's been an active long day today. The Dr told us the bone marrow biopsy is showing Russ has 97% engraftment! He is 3% away from a 22 year olds blood coursing through his veins. His body is still very tired and worn down. It's going to take a long time before he has the energy and strength he once had.


Russ continued to drink water and walk his laps so it could be logged for the Dr to see.


The Dr is happy with the results and is scheduling discharge for tomorrow.


He will evaluate Russ again in the morning before signing off for discharge but it looks like we are going home!


Tomorrow is our 45th day in the hospital. And tomorrow will be the first time Russ will leave the 6th floor since he was admitted on Dec 15.

After discharge, Russ will be in isolation at home for the first 100 days and will be extremely susceptible to everything. He will not have any immunities for the first year and will need to stay away from crowds, groups, anyone with even the slightest illness. A virus or infection could be extremely dangerous for Russ.


We have very specific instructions to follow in order to keep Russ safe and will be following them closely.


We are about to step out into the next phase of treatment. And looking forward to it.


Thank you all for your continued support of Russ. His journey is not over yet. We have just gotten through phase 1. Now starts the hard part and we hope you will continue to follow this journey with us. Your presence does make a difference.

_______________________________________

Many of you have been asking how you can help.
Contact me ( [email protected] ) or Twyla ( [email protected] )

[SMan]

Great news! Prayers for Russ' continued recovery.

[Bob Womack]

I'm happy to hear it!

[callouses]

Congratulations! That has to feel so good! I spent 3 weeks in the hospital last year, so, I know the joy of getting out....It's a great mental boost that helps in your healing too, just getting out of there.....Best to you and keep us posted...